Questions, anyone?

[Lulu54]

This Saturday I will be attending a 3 hour informational session with my MSologist, and his MS nurse.  He was more than willing the last time I went to one of his talks to answer our questions and I thought I would offer to do the same again this weekend.

so bring it on.... what question would you like answered?  Our first list was pretty extensive we might not have any ones left. LOL

You can read the first group at

http://www.medhelp.org/posts/Multiple-Sclerosis/If-you-could-ask-only-one--question/show/1501565?personal_page_id=865800

[sllowe]

~What, if any, relationship exists or "should" exist, between MS Neuro and patient's Regular MD in regard to patients overall health and disease course.
  ~If relationship/communication is non-existent, or deemed unnecessary, why?  Considering the simple fact secondary conditions to MS are typically primary in MSers.

-Shell

[supermum_ms]

I think your MSologist is wonderful, i'm not sure there is even an equivelant of him over here but I am looking, i'd normally tell you to give him a kiss from me but ohh i dont know how you'd like that :-0

My question is related to cognitive and communication issues, commonly discussed within our community of international MSers. Its only in resent times that this is starting to get a mention by the medical community though seemingly as yet to be recognised as being a notible symptom of MS.

There seems to be the exceptance through reseach projects that fatigue is what drives the MSer out of the work force but very little is mentioned or acknowledged regarding the retreival issues of prior learned professional skills, the acquasition of dyslexic or ADD tendencies, the acquasition of visual and or central auditory processing issues, the difficulty of communicating competency when the MSer has acquired word retrieval and or a slurr/stutter. Fatigue obviously plays its part but still these other issues i've mentioned seem to be minimised in importance or acknowledgement in what is equally or more likely whats driving the MSer from the work force.

Q: Why are the cognitive and communication issues of MS not getting recognised as valid life altering issues compaired to other sx of MS?

The other question I have is very specific in nature, I at one stage during a long nausty relapse lost all nouns, only nouns disapeared. For example I couldn't name my children but knew exactly who they were in relation to me, their likes and dislikes etc but what they were called was no longer an automatic rolling off my tongue function. It seems beyond the usual word retreival issues because it is very specific in nature, any and all nouns and it really does apear to be only nouns being affected. Any noun from what the white liquid is called that I put in my hot drink to the names of immediate family, it doesn't descriminate, all nouns just get wiped out of my memory bank. I do get them back once the relapse is over but it takes work and time to regain this basic information, its also one of the first things to slip when over tired, hot or going into another relapse.

Q. I expect a peski lesion is to blame (lol) but can you explain the what, where etc of what is happening and if there is any research available on the subject?


Hugs and appreciation from down under!

Cheers..........JJ

[Sumanadevii]

Thing is Lulu, she does think it is essential.  I guess I know it is considering without them...and I have tried spacing up to six weeks only to find I can no longer move.  Truly I would be bedridden at this point without them.  By the time I got to her for treatment, my husband was bathing me, I couldn't get in or out of bed by myself, my legs won't lift....With them I can do a bit of walking with my walker and ride (winks) my recumbent bike...HOW FUN!!!!  

I guess I have to weigh quality of life now for what might be?  Just would like another opinion.  He may have another idea?  Something that might help as well other than steriods?

[Lulu54]

I want to know how I can tell the difference between a relapse and just the progression of my MS.  Taking steroids too often is a concern I have,too, and don't want to take them if they aren't an essential piece of the treatment.  

[Sumanadevii]

Lulu, something I fear asking my own neuro.  What are the aftereffects of long term steroid use?  I am speaking of my own experience of two grams (taken over a two day period) every three weeks.  From my understanding it is a two year program to get my MS under control.  Would love to hear from another neuro...an opinion.

[Lulu54]

JemmAus - I will have to give him that one in writing because not only don't I know what it is, I have no clue how to say it, either.